I have been lurking on these forums for some time now and I first want to thank this community for sharing all of their stories and knowledge. It has been helpful to me and my family in gathering the information necessary to keep up with the ever evolving treatment options for CML and to also see all of the different scenarios that many folks are facing.
I was diagnosed with CML back in April, 2010 when I was 25 years old. Like many others here, I felt fine for the most part, just a bit tired. I went in for a checkup and upon reviewing some routine blood work I was immediately called into the hospital. I had a WBC of 370k and the general practitioner was really surprised that I was even able to move around like I was. That was the first time I had ever been hospitalized. Fortunately, I had a loving fiance (wife now) and loving family members that sat by my side as we ran through the entire gamut of tests trying to determine the cause. It was a lot of "what ifs" while we awaited the diagnosis, only knowing that it was likely cancer of some form.
Before beginning treatment I donated sperm (I had to leave the hospital without approval from my doctor) as we still plan to have children and some of the possible side effects of the Hydroxyurea they were going to put me on were fertility related. Once back, I began Hydroxyurea treatment to lower my counts while we awaited test results to determine the type of blood cancer I had. Once it was determined that it was CML, I was informed that this was one that recently had made some medical breakthroughs and what was once considered a 1-3 year life expectancy had evolved into much longer than that. It was then that the "what ifs" turned into "Now this is what we are going to do." I'm much more comfortable having a course of action and do not like being left to my own "what ifs".
I started on 400mg Gleevec and have been on that the last 2+ years. I've been fortunate to not have many side effects, just fatigue and some water retention for the most part. I reached CHR in just a few weeks and then reached CCyR in 9 months. My PCR hit its lowest point of -2.72 logs (1.1%) back in July, 2011. I kept hoping for the MMR, but never got to it.
My PCR is beginning to creep back up. I had my low point PCR in July,2011 (-2.72 logs, 1.1%), had another PCR in February, 2012 (-2.56 logs), and the latest PCR in May, 2012 (-2.40 logs, 2.3%). I am scheduled to go in for another BMB and a mutation test this coming week and we'll see where we go from here. Based on everything I've read here involving other folks and their stories, I have a lot of hope for a great future.
Thank you again to everyone that has had the courage to share. I'm sorry it's taken me so long. If there is anyone that has found themselves in a similar situation with rising PCR levels (I know that without knowing specifics on possible mutations it will be hard to judge) I'd be interesting in hearing about it. Your story may have some application towards my own.